Hellobee

I’ve avoided writing a post on Sensory processing disorder (SPD) because I don’t have answers; not even a lot of advice. I’m not an expert; in fact I am still a skeptic and I’m not alone. WebMd had a great article addressing the doubt related to this disorder. All I can share is my story, and hope that if someone is experiencing similar frustrations that it gives them something to talk to their pediatrician about.

What is Sensory Processing Disorder?

Sensory processing disorder can affect anyone. Studies indicate that 5% to 16% of children exhibit symptoms of SPD. According to the WebMD article, which I like better than any of the books I’ve read (mostly because I see a lot of similarities between my boys and the one mentioned in the article):

Sensory processing disorder has been compared to a “neurological traffic jam,” in which sensory signals received by the brain — about everything from the taste and texture of a food to the intensity of a touch — become garbled and disorganized. People with SPD may be oversensitive (or undersensitive) to stimulation of any of the five senses.

Our Story

When D was born he wouldn’t breastfeed despite many, many attempts – lactation consultant and nipple shields – nada. Not too big of a deal, so I pumped and moved on, not knowing that this could have been the first red flag. I never had to worry about taking a pacifier away because he wasn’t that enamored with anything in his mouth – score one for us, I thought. We were excited for him to try solids, but that didn’t go over so well. But, then again, does rice gruel ever go over well? For my baby shower I got a fancy Beaba baby food maker and I was ready to flex my organic food making muscles, but kept striking out with every batch created. Try after try he gagged or just wouldn’t open his mouth, not even for applesauce. I was a little bummed, sold the Beaba on the parent board and started trying different baby food jars. All fruits were a big NO (sad for me because I think that jarred bananas are tasty), but somehow we discovered that he liked Earth’s Best Turkey and Pea. We bought cases of it and gave him a lot of formula.

Not a fan

Here is an excerpt from my journal around his ninth month:

I contacted a sleep therapist. Her quote was $300 to help us. But, after his 9 month check-up with the pediatrician, she thinks the night-time wake-ups are directly related to him not eating and being really hungry. Yes, I have a little anorexic baby. He WON’T eat. The only thing he will even eat is hummus and turkey and pea baby food. So that’s that we have been feeding him. The doc is afraid about his weight slipping, so we have to go back in four weeks for a check-up. She said he should be eating 1 jar at Breakfast, Lunch and Dinner. He eats about a jar a day.

Around his first birthday when it was time for finger foods, he refused most things, including Cheerios. I started to notice that the gagging had increased which caused a lot of anxiety for both of us. Finally, on his first year appointment my pediatrician suggested that we make an appointment with NYU’s Swallow Team about the gagging. He was evaluated, but there was nothing wrong with his swallowing mechanism; instead they suggested that he may have a sensory processing disorder, something that I had never even heard of before.

Early Intervention was called, the evaluation conducted and D was diagnosed with mild SPD. However, his case was not debilitating enough to qualify for funded services, which meant that all the suggested therapy: Occupational, food and sensory gyms, would be out of pocket. We elected to wait-it-out and see if he outgrew it. It wasn’t the cost of these services that held us back, because if I felt that something was really wrong, I would gladly hand over my life savings to cure my kiddos. But, mostly because I didn’t believe in this vague “disorder.” Sometimes it seems that every behavioral issue is labeled with a disorder these days. Clearly something was wrong, but was it really SPD? I mean, I don’t like touching the bottom of pizza, hate celery strings and think that sponges are the most vile things on earth, but is that a quirk, or a disorder. See what I mean?

We picked up a Zvibe (he hated it, but we forced it); and some knobby chew toys (again, not a favorite); vibrating toothbrushes; I read books like The Out-of-Sync Child, by educator Carol Stock Kranowitz and the The Sensory Sensitive Child by Karen Smith, PhD and Karen Gouze, PhD, and although some of their cases sort-of resembled mine, most were worst-case scenarios, which thankfully wasn’t D. Another neighborhood mom was dealing with a new and severe SPD diagnosis of her son, but I felt like I couldn’t commiserate because in her case, her son couldn’t function in a loud classroom setting; he was a playground escapee/runner so complaining to her about my eating issues seemed petty.

The more I read, the more confused I was. The checklists were conflicting – he may have some symptoms (what normal little boy doesn’t fit into SOME of these categories?) but the opposite of other things on the list. I felt like his diagnosis could have been based on my subjective opinion vs real observation. So, the battle of bites, vomiting at various smells (like his brother’s dirty diaper) and gagging when bribed to try a new food continued for the next three years. Sometimes he gave us hope – all of the sudden he would eat lasagna or guacamole and then for no reason at all never eat it ever again – which only confirmed my opinion that this was behavioral not a disability.

When I look back I see my errors which sting, but luckily for us D’s case wasn’t (and I hope won’t be) debilitating; just frustrating. But, the more I read, the more nervous I got about our decision to forgo therapy, especially during the summer before he started kindergarten. I started to notice how physically agitated he got when I asked him to sit down and practice writing letters to prepare for kindergarten and I remembered in The Out-of-Sync Child, Kranowitz wrote that sometimes sensory issues and writing problems go hand-in-hand. Of course I flew into a googling frenzy and found articles like this one, which addresses school-age specific issues. That summer I had D evaluated again, and the therapist said that he had learned to cope with SPD, and now it was even harder to diagnose, but again therapy wouldn’t hurt. I agreed, and decided that come Fall I would see how he adjusted to school and slot in therapy. But, he started school, and he flourished. He was writing, and making friends, and was a normal five year old kid. I packed the things that he would eat in his lunch and didn’t think too much about it.

His first day of school he came home bubbly and enthusiastically told us about his day. When it got to the lunch description he said, “And Mom, you’ve got to see lunch, there are like a thousand kids (120 kindergartners) and it sounds like, “arrrghghghghhhhhhh (yelling).” I got to see it first hand because I signed-up to be a lunchroom volunteer on Tuesdays. In the beginning I would come by D in the lunchroom and remind him to eat and then make my rounds to help kids open cheese sticks, milk cartons and wipe-up spills. Half-way through the school year D started sitting alone on the other side of the lunch room, where the staff usually sits. He said he needed peace and quiet, and I got the feeling from his actions and little comments that he was embarrassed about eating the same thing everyday. He wasn’t distressed, in fact he seemed to really like sitting alone and after he found “his table” he started eating all his lunch. Only, as a Mom it was heartbreaking to see him sitting alone, even though he said that he preferred it. Clearly, we had crossed into the “not normal range” and I couldn’t avoid the facts, if peer pressure couldn’t coerce, something was definitely wrong.

Heartbreaking

This brings us to today, where I’m waiting for renovations to be completed so that we can finally welcome a feeding therapist into our home. Therapy never hurt anyone, and I’m ready to give it a try. I’ll keep you posted on how things go and feel free to reach out if you’ve had positive or negative experiences with SPD therapy. I’m curious.

If you are wondering whether your child may have SPD there are several check lists online, the one below is provided by SPDfoundation.net. I also really like spdsupport.org’s checklist (overlook the typos):